PRPH2 Workshop 2026

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Foundation Fighting Blindness and Nixon Vision Foundation logos with text PRPH2 2026 Workshop

Workshop Introduction

The urgent mission of the Foundation Fighting Blindness is to drive the research that leads to preventions, treatments, and cures for degenerative retinal diseases, including those caused by mutations in the PRPH2 gene. Mutations in PRPH2 lead to a variety of dominantly inherited retinal dystrophies, including retinitis pigmentosa, cone-rod dystrophy, pattern dystrophy, and others.

The Foundation Fighting Blindness, together with the Nixon Visions Foundation, invites you to join a free, in-person workshop bringing together individuals and families affected by PRPH2 and associated retinal diseases, along with researchers, physicians, and industry partners. This workshop builds on the highly successful PRPH2 and Associated Retinal Diseases Workshop held in 2023.

Workshop Goals

The main goal of the workshop is to continue to bring awareness and build community across PRPH2-related retinal disease and accelerate research on biological and therapeutic approaches. The workshop will:

  1. Assess the current state of PRPH2-related retinal diseases.
  2. Highlight and honor recent scientific advances.
  3. Identify critical gaps to shape future research and funding priorities.
  4. Convene patient and scientific communities.

What to Expect

This Workshop is designed to bring together affected individuals and their families, in addition to leading experts from academia, to discuss openly, and in detail, what is known about PRPH2 disease pathology, disease models, clinical characteristics, and therapeutic approaches. Importantly, there will also be opportunities to hear from affected individuals and their families to ensure their perspectives for care, treatment, and therapies inform both research and clinical studies. 

Workshop Schedule

The workshop will be held on September 9–11, 2026, at the Hilton La Jolla Torrey Pines in San Diego, CA.

Wednesday, September 9, 2026

Start Time

End Time

Event

Presenter/Panelists

Session Description

5:30 p.m.

  

Welcome Reception

    

6:30 p.m.

  

Welcome Remarks

Brandon Nixon

  

Thursday, September 10, 2026

Start Time

End Time

Event

Presenter/Panelists

Session Description

8:30 a.m.

8:45 a.m.

Welcome & why are we here?

Jason Menzo
Chief Executive Officer
Foundation Fighting Blindness

Amy Laster, PhD
Chief Scientific Officer
Foundation Fighting Blindness

Join us for a brief welcome and introduction from the CEO and CSO of the Foundation Fighting Blindness, highlighting the mission, key themes, and goals of the event:

8:45 a.m.

9:05 a.m.

Looking back and looking forward: 5 years of supporting PRPH2 research

Brandon Nixon
Nixon Visions Foundation

Brandon Nixon, co-founder of Nixon Visions Foundation, will look back over the past five years of supporting PRPH2 research, progress, and hope for the future.

9:05 a.m.

 9:15 a.m.

Patient Perspective

Isabelle Ortner

A patient will share their experiences living with PARD.

9:05 a.m.

9:25 a.m.

Setting the Stage: A PRPH2 Primer

Angela Bowman, PhD

Director of Scientific Research

Foundation Fighting Blindness

This session will provide a lay overview of PRPH2 biology, genetics, clinical manifestations, and therapeutic approaches.

9:25 a.m. 

10:20 a.m.

PRPH2 Foundational Biology

Moderator: James Birtley, PhD

Speakers:

1. Yoshikazu Imanishi, PhD

2. William Spencer, PhD

This session will cover topics in foundational PRPH2 biology, including models, the cellular function of PRPH2 and how PRPH2 is trafficked to outer segments.

10:20 a.m.

10:35 a.m.

Morning Break / Networking

10:45 a.m.

12:00 p.m.

Genetics and Patient Heterogeneity

Moderator: Ajoy Vincent, MBBS
Panelists:
1. Jason Comander, MD, PhD
2. Bart Leroy, MD, PhD
3. Radha Ayyagari, PhD

This session will discuss current understanding of PARD phenotypes, challenges associated with patient heterogeneity and studies to uncover how specific variants affect PRPH2 function.

12:05 p.m.

 1:00 p.m.

Lunch

1:00 p.m.

 1:55 p.m.

Therapeutic Approaches – Genetic Technologies I

Moderator: Peter Quinn, PhD

Panelists:

1. Andrew Goldberg, PhD

2. Krzysztof Palczewski, PhD

This session will discuss emerging therapeutic approaches for PARD, including gene augmentation, genome editing, and knock down and replace.

1:55 p.m.

 2:05 p.m.

Patient Perspective

Angus Patrick

A patient will share their experiences living with PARD.

2:05 p.m.

2:30 p.m.

Break / Networking

2:30 p.m.

 3:25 p.m.

Therapeutic Approaches – Genetic Technologies II

Moderator: Frauke Coppieters, PhD

Speakers:

1. Renee Ryals, PhD

2. Shyamanga Borooah, PhD, MBBS

This session will cover additional genetic technologies, including delivery modalities and ASOs.

3:25 p.m.

 3:40 p.m.

Day 1 Wrap Up

Robert Hufnagel, MD, PhD

Rob will provide a (lay) summary of day 1.

4:00 p.m. 

5:00 p.m.

Scientific Gap Round Table Discussion

Moderator: Angela Bowman, PhD

This session will engage scientists and clinicians in deep, moderated discussions of gaps associated with key research areas.

4:00 p.m.

 5:00 p.m.

Patient and Family Gathering

Moderators: Brandon and Janine Nixon

 

5:30 p.m.

 7:00 p.m.

Reception

7:00 p.m.

 8:30 p.m.

Dinner

Speaker: John Samuel

 

Friday, September 11, 2026

Start Time

End Time

Event

Presenter/Panelists

Session Description

 8:45 a.m. 

8:55 a.m.

Welcome

Jason Menzo

Mr. Menzo will welcome attendees to day 2 and cover any housekeeping items.

8:55 a.m.

 9:10 a.m.

PRPH2 Survey Results

Naomi Wagner, MS, CGC

Ms. Wagner will share the results of the PRPH2 patient survey.

9:10 a.m.

9:40 a.m.

Therapeutic Approaches - Cell Therapies and Gene Agnostic Approaches

Moderator: Katie Cording, PhD

Shyamanga Borooah, PhD, MBBS

This session will cover additional therapeutic approaches, including neuroprotection, stem cells, and optogenetics.

9:40 a.m.

9:50 a.m.

Patient Perspective

Estibaliz Simon

A patient will share their experiences living with PARD. Include a thank you to scientists and researchers.

9:50 a.m.

10:10 a.m.

Break

10:10 a.m.

10:50 a.m.

Round Table Report-Out

Moderator: Angela Bowman, PhD

This session will provide an opportunity for a report-out on key takeaways from the scientific round table discussion groups.

10:50 a.m.

11:00 a.m.

Patient Perspective

Virginia Harper Breen

A patient will share their experiences living with PARD.

11:00 a.m.

11:30 a.m.

New and Next

Moderator: Preeti Subramanian, PhD

1.  Qin Liu, MD, PhD

2.  Breandán Kennedy, PhD

The newest PARD awardees will give an overview of their exciting new projects.

11:30 a.m.

11:45 a.m.

Summary and Next Steps

Amy Laster, PhD

Dr. Laster will provide a summary of the meeting and discuss next steps for accelerating momentum for PARD research.

11:45 a.m.

11:55 a.m.

Final Remarks

Jason Menzo, Brandon Nixon

Jason and Brandon will close out the workshop

12:00 p.m.

12:15 p.m.

Group Photo

 

 

12:15 p.m.

1:15 p.m.

Lunch

1:00 p.m.

3:00 p.m.

Optional tours of Shiley Eye Institute

Questions about the workshop should be addressed to Michele DiVincenzo, Vice President, Scientific and Educational Events, Foundation Fighting Blindness, MDiVincenzo@FightingBlindness.org

The workshop is free to attend, and all meals are included.

How to Attend

To participate in this workshop, you must complete both steps below:

  1. Registration is currently closed, if you would like to be added to the waitlist, please email Michele DiVincenzo at MDiVincenzo@FightingBlindness.org.
  2. Book your hotel room separately using the instructions in the Accommodations section.

Accommodations

The Foundation Fighting Blindness has secured a rate of $279/night + daily resort fee of $26.00 for a standard room at the Hilton La Jolla Torrey Pines. Please make your reservations by Tuesday, August 18, 2026, to receive this room rate and ensure availability. All reservations should be made, modified, or canceled by you, the attendee, by completing your reservation online or calling Hilton La Jolla Torrey Pines Reservations at 877-414-8020 and referring to the group reservation code ‘FFB26’.

Scientific Presenters

  • Radha Ayyagari, PhD
  • Shyamanga Borooah
  • Frauke Coppieters, PhD
  • Jason Comander, MD, PhD
  • Andrew Goldberg, PhD
  • Rob Hufnagel, MD, PhD
  • Yoshi Imanishi, PhD
  • Breandán Kennedy, PhD
  • Bart Leroy MD, PhD
  • Qin Liu, PhD
  • Krzysztof Palczewski, PhD
  • Peter Quinn, PhD
  • Renee Ryals, PhD
  • William Spencer, PhD
  • Ajoy Vincent, MBBS

Foundation Fighting Blindness Participants

  • Jason Menzo, Chief Executive Officer
  • Amy Laster, PhD, Chief Scientific Officer
  • Todd Durham, PhD, Senior Vice President, Clinical and Outcomes Research
  • Preeti Subramanian, PhD, Vice President, Preclinical Science
  • Angela Bowman, PhD, Director, Scientific Research
  • Katie Cording, PhD, Science Research Lead